The fog is real! How Empowering Epilepsy's Patient Education Program Helped Anthony Find Hope Again.

Like myself, an estimated 70-80% of people with epilepsy experience what's known as "brain fog," or cognitive impairment. In my journey, seizure related fog has been closely tied to my foggy understanding of epilepsy, in addition to navigating the complexities seizures bring to daily life. I was blessed to come across Empowering Epilepsy because it has helped me in countless ways, starting with my very first Adults and Epilepsy Talk just a few months ago.

I had pretty much given up hope of finding a doctor who could help me, and was trying to accept that seizures are just going to be part of my life now. This was a rather depressing thought, especially because I finally overcame a very bad 20 year alcohol addiction in April 2025. During the 3 years I spent working on that, I experienced withdrawal seizures. Despite talking to the doctors about a traumatic brain injury I also suffered from diving into a pool in 2017, I felt like the neurologists who had done MRIs and CTs of my head just treated me as an alcoholic, and didn't look much deeper into the cause of my seizures, even after alcohol was no longer a possible cause. I had overcome my alcohol addiction, and if I could beat that, why couldn't I beat epilepsy?

I rarely use Facebook but found myself on it one day and the Empowering Epilepsy group popped up. This seemed like divine intervention, and it has turned out to be a God send. 

Leigh Goldie, who helped found Empowering Epilepsy, is also the adult group facilitator who warmly welcomed me to the group. From the start, she has shown true compassion for helping people with epilepsy. After my first group meeting, we then met via Zoom and she sent me a Patient Education Program folder filled with wonderful information about epilepsy, the brain, and seizures. She then took time to review it with me which helped me understand a lot more than my neurologist ever did. I was then able to share it with my family so that they would have a better understanding of what I was going through. It broke things down in a way that made it easy for people to understand and it really benefited my family.

Leigh also told me about epileptologists - neurologists who specialize in epilepsy. I had never heard of one before and Leigh highly recommended that I see one because it would be a world of difference from a general neurologist. I live in New England, and already have a team of doctors for other medical reasons at Yale Hospital in New Haven, CT, and learned that they have a Level 4 Epilepsy Center. Leigh highly encouraged me to see an epileptologist there, so I just did on 11/3/2026.

Leigh couldn't have been more correct about the difference. I met with Dr. Robert A. Rifkin MD, PhD who is an Adult Epileptologist and an Assistant Professor of Neurology in the section of Epilepsy at Yale School of Medicine. It was such a great meeting! Dr. Rifkin spent about an hour with me reviewing some of my head MRIs, CTs, and a recent 48 hour at home EEG. From the moment we met, the doctor was very personable, interested in learning about my medical history, and what my experiences have been like in regards to my seizures. He listened to me closely, with genuine interest, took a lot of notes, and made me feel heard and understood. 

We spent about an hour together and it was a world of difference, just as Leigh said it would be, than my experience with my now previous neurologist. I'm beyond grateful to now have him on my team! Meeting the doctor has given me renewed hope, and it most likely wouldn't have happened without Empowering Epilepsy.

To quote Dostoevsky, "To live without hope is to cease to live." I'm incredibly thankful for Empowering Epilepsy, to both the staff and participants who have provided me with a support group that has positively changed my life and gives me hope again. As real as it is, I can already feel the fog lifting. Thank you to everyone who makes this group an amazing resource!

Anthony

Rhode Island